Crowd-Sourcing with My Peeps with an Update

I'm working on an exciting new project that has the potential to be a game changer and really help caregivers of children with special healthcare needs and disabilities. I need your help.

I'm compiling a list of people in the Caregiver/Special Needs Healthcare/Disability Community and would love your suggestions.

Here are the categories:

1. Real Parents (like yourselves or people you know)
2. Creative people who are also parents or involved with caregiving
3. Famous people: celebrities, writers, etc.
4. CEOs 
5. Organization Leaders that are also parents
6. Big Foundation execs
7. State and Federal Special Education Leaders

You don't have to know these people personally, although if you do, that's great (and I'll contact you separately to get more info) -- just know of them. I need names. If you could sit and really think about this, jot down names and either contact information or titles, I would really appreciate your list. If you're one of these people, please let me know!

I appreciate it and look forward to your lists!

**Please email me your lists if you don't want them "public." If you do have ideas on people, that's fine to leave their names right in the comments. My email is elsophie@gmail.com

How We Do It

When I feed Sophie oatmeal, I put one hand on her forehead and with the other coax a spoonful into her mouth. Then I put a finger on her chin and will her to keep her mouth closed and chew. Then I quickly scoop up the drool and any food that isn't chewed up and put it back in her mouth. I keep my hand on her forehead the whole time so that she doesn't drop her chin and let it all fall out. This routine is the same at lunch and dinner and I am patient on the outside, mostly, but dying on the inside. Her physical abilities are changed, too, but I don't feel like going into those here.

Do you want me honest or do you want me inventive?

I only have theories as to what's going on and actually don't welcome yours unless you've been helping me out for years or otherwise get it. I am taking the necessary steps to make sure that this is not the new normal. 

Yet, Sophie is incredibly alert and responsive and is having very few to no seizures and for that I am grateful.

I remember talking to my friend Erika years ago when she was struggling intensely with her daughter's cyclical vomiting and simultaneous seizures. Her daughter has a rare genetic defect that causes her countless issues, and Erika was in the full throes of it. I'm talking vomit and suctioning and seizures and more vomit and no sleep and no washing machine in the apartment to wash the soiled linens. No nursing, either, and a dear husband who had to get up early in the morning and go to work. It sounded, frankly, completely insane, yet she was living it and laughing with me over the insanity.

For a while, my friend Jody repeated this to herself and to me, "it's impossible," and I felt released from any burden I might be carrying.

I've walked into Sophie's room numerous times and found her seizing, sometimes safely on the bed and other times splayed in various positions on the floor. One time her head lay in a soft box filled with toys, another time she was on her knees, folded over on the mattress, her arms stiff, as if she were crucified. Honestly. Inventively, she was a prostrate supplicant, a postulant, perhaps (I was once a Catholic and was dutifully obsessed with these things). If you saw this stuff, you would, I imagine, cry or panic and certainly express that you couldn't do what I do. I suppose the rush of adrenaline gets you through, or maybe it's dissociation that comes, ironically, in like a flood. It's only occasionally that I think how not normal it all is, how fucked up. And the fuckery isn't just the seizures and suffering. It's the living it.

Do you want me honest or do you want me inventive?

Imagine a scene in a movie where someone has suffered heartbreak or someone has died, and the streets are filled with women in dark dresses, tearing out their hair as they walk down the street together, always together, and wail. They will eventually stop and eat together somewhere, certainly bread and maybe cheese. They'll brush one another's hair and lie curled up on beds with white sheets, their fingers trailing down backs lightly and laugh, always laugh.

Sibling Story: Meet Dylan and Her Brother Bear

A good friend sent me the following short essay written by Dylan, an 11 year old girl whose 8 year old brother has autism.  The essay accompanies an appeal for donations to the upcoming Autism Speaks walk in Los Angeles. Siblings of those with autism and other developmental disabilities are sometimes lost in the shuffle for obvious reasons. Statistics indicate higher rates of depression, anxiety and other mental health issues for siblings of the disabled, too. It's something most of us who extreme parent are painfully conscious of, I'd venture to say, every single moment. Those of us who parent "typical" children are often told that they will grow up to be more compassionate because of the relationship, and while I find this somewhat comforting, I subscribe more to the who the hell knows how we all turn out mode of thinking. That being said, I found Dylan's essay so profound, moving and authentic that I asked whether I could share it here. This is an extraordinary child, a sibling of another extraordinary child.

My little brother is autistic. It doesn't bother me much. He's different, but in a way, just the same. I don't ever find myself wishing he wan't who he was. I would not be myself if he was someone else. My parents say they were devastated when they were told that he was autistic. I most likely wondered why they were crying. What about this was bad? Of course, I was too young to understand. I didn't notice he acted somewhat different than others until I got older. One way I could tell was because some people stared at him, or gave him strange, sometimes rude looks, and some people still do. Not many understand. Luckily, my friends have accepted his differences, and are able to have nice conversations with him, despite his disabilities. 

We like to play together, my brother and I. Sometimes tag, hop-scotch, hide-and-go-seek, or any game that siblings enjoy. We have a great time. It is within these moments that I realize: he is not at all different from anybody else in the world. There are many stereotypes that claim that anybody who is different is bad. Back in ancient Greece, the government would leave children who were weak or different out far away to die. It is not only wrong that different is bad, but the way they are using the word "different" is wrong, too. Technically, nobody is exactly the same. There is no "normal" human being. Everyone is different.

There are some things about him that annoy me, some things that make me laugh my guts out, and some things that just blow my mind away. It's annoying when he throws tantrums (which is rather often), and when he hums and moans for no reason. Well, maybe, there is a reason, just one that none of us know of or think is particularly important. It's also not that pleasant when he breaks things. I feel like he only ruins my stuff, but I'm sure I'm wrong. And when he pauses and rewinds movies when I'm trying to watch. But, it is very funny when he sometimes says sentences or words incorrectly. "Come for here," or "I was born until 2005." "Yesterday, for longer time ago," means a while ago, or sometime in the past. Every once-in-a-while, he'll say to us, "What the fu-heck?" He used to call the ocean the "ochin", and tells my pregnant aunt, "You have a full tummy." His enthusiasm is hilarious, too. It's like putting a thousand exclamation marks after a sentence. Even though it makes me angry, it cracks me up when he scolds me. "If you don't do homework, you get no [devices], Dyl-wan." I keep telling him he's not in charge, but I don't think he will ever stop scolding me. His memory is amazing. He can easily memorize addresses. If he ever doesn't remember, he'll ask, "What's that's number for?" Dates are also very easy for him to remember. His drawing skills are definitely incredible. 

If a cure for autism was ever created, I would refuse our offer. My brother is the best brother anyone could ever ask for. I would never change him for the world, but I know I will change the world for him.

-Dylan

If you would like to join us on walk day, please click the link below and search for Team Bachman:

www.walknowforautismspeaks.org/losangeles

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Living Well With and the Living Hell of Epilepsy

For many, many years, efforts to remove the stigma that epilepsy carries focused on a "living well with epilepsy" approach. "Normal" people who also "happened" to have seizures but who otherwise lived "normal" and productive lives were paraded out in advertisements and marketing materials, and while this helped to dispel myths about epilepsy, the approach neglected a significant number of people whose lives were severely affected by the disease. What happened because of that is a woeful under-funding for research into the causes of and cures for the epilepsies, and, equally as important, a lack of knowledge and awareness of just how serious the disease can be, including a higher incidence of death than breast cancer. The mental health aspects of the disease -- for both the person suffering the seizures and the parents and siblings of that person -- are often unacknowledged despite grim statistics, and the work I've done recently with national groups trying to remedy the inadequacies of the healthcare system have only just pecked at the surface. I call that number -- the nearly 30% of people with epilepsy whose seizures are not controlled and whose lives are significantly impacted by the diseases as those who are experiencing The Living Hell That is Epilepsy.

With that in mind, the Los Angeles affiliate of the Epilepsy Foundation of America produced the following video that they showed at their most recent fundraiser. I think it deserves to be seen and shared and would appreciate you doing so if you have a moment.

Drug Mule, Part 3,456,896 in a series**

Good Lord, ya'll!

I think I've graduated from drug mule to racehorse! I found out about a non-profit organization that gives grants for certain medical conditions to cover unaffordable medical costs, so I applied and received word that we will be receiving financial assistance for the costs related to Sophie's diagnosis. This means I'll be able to go to our local Rite-Aid and pick up the Onfi prescribed to Sophie instead of engaging the help of Canadian friends. I heard about Caring Voice Coalition, ironically, from a representative of the drug company that makes Onfi. He got my number from our neurologist who has been busy helping me to figure out a way to get this drug to Sophie without resorting to swallowing tiny packages of it and slipping over the border that separates The Sane from the Insane (that would be Canada and the United States). My first reaction when The Man From Big Pharm called was to pull out my breadstick and start taking deep inhalations. Let me get this right, I remember saying to The Man From Big Pharm, instead of lowering the cost of your drug so that normal people can afford it, you donate tens of millions of dollars to non-profit foundations to pick up the cost of said drug? The Man From Big Pharm laughed uncomfortably and told me that age-old expression that Little Men and Women of Industry are all trained to say: I understand your frustration. Reader, you know me so I'll leave it to your imagination what the rest of the conversation entailed. I eventually thanked The Man from Big Pharm for listening to my tirade, took down the name of Caring Voice Coalition, sighed and moaned for a bit about the insanity of it all and then investigated, filled out the application, sent it off and waited.

Good Lord, ya'll! We did get the grant -- a sizable one that will cover the expense of Onfi for the near future.  I just have a few more papers to sign, some telephone calls to make and I think we're set! I am grateful for the help of our neurologist in pleading our case with Big Pharm. I am indebted to the two Drug Mules that brought Sophie's medication from The Sane across the border to The Insane. I am filled with gratitude for the sweet, efficient woman assigned to our case at Caring Voice Coalition. I'm even a tiny bit thankful that The Man from Big Pharm allowed me a holy and righteous rant. I'm also grateful to all my readers here and just know that you'll allow me to continue being a bit mulish about Big Pharm in general.




**If you're new to this blog and want the back story, read where it all started and my favorite post  HERE. Then read HERE and HERE. If you search for all my posts that contain the words "drug mule," you'll find a veritable bonanza.

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!